Guilt is visiting

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marya

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Today I am going to work for a meeting that has already been postponed twice because of various dr appointments and other als and husband related issues. I cannot put it off again - the CEO and president of the firm I work for have been beyond understanding, but I have to go to this meeting. Although I am not truly prepared for it...Why do I feel guilty? Not just about going to work, but for wanting to go to work - for wanting to have P&L and balance sheets to review, to make decisions about the direction the firm will go as we still deal with the financial crisis? These meetings usually break for lunch - I've scheduled it so that I can dash home to take lunch home for him - but I feel like I'm letting everyone down - not giving 100% on either of my commitments. This will be the first meeting since 1998 that I did not write the agenda, determine the topics, provide the direction and have significant input into the discussions. I feel like I'm losing it all the way around. I hope this is a passing guilt - and that it'll be better when I'm mired in the meeting. ....Mary
 

pepsiman

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Welcome to the club. Even six months after Liz has passed I still feel like I let her down in so many ways. I don't even want to talk about how I let my coworkers down. They were also very understanding and helpful. The fact is though, you can only give so much. At some point you have to take a little for yourself.

Dick
 

MACDONR

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Guilt is always an unwelcome visitor. My mother was DX in April 2009 & passed in December 2009. The whole time I was guilt ridden - when I was with her I felt guilty that I wasn't at home w/ the family. When I was at home I felt guilty I wasn't with her. I felt bad when I went to a movie or out for the evening when my mom was so sick. There were days when I wished I lived far, far away. Don't fret. We can only do so much. I was told numerous times to take care of myself as I wasn't eating properly or sleeping very well. As long as you are doing what you can, that is the main thing. I too was thankful for work. There were days I wished I could work weekends (how's that for wacky?) I think it kept me sane. We all at one point feel guilt - we can't help it. But the feelings are normal. Don't worry we all need to feel some sort of normalcy in our days because ALS is so life consuming. Take care of yourself.
 

Tom's Support

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C'est ca. People who are wired to give in the extreme seem to be lacking any sort of wiring for receiving. This, I think, is where the guilt comes in. When your co-workers and employers offer understanding and help with the workload we see it as a debt we owe rather than as the gift they meant to give. When we look forward to what most people are happy to get away from (work) we feel guilty for wanting to be part of the working world and have that affirmation that comes from connecting outside the home rather than allowing ourselves the right to exercise our minds. Worst of all, our loved one is sick and we are healthy and because there is nothing we can give to take that away, we feel guilty for being the healthy one.

My very best friend said to me "If you were the sick one and Tom was the healthy one, would you be looked after as well as he is now?"
That put my role into perspective and although guilt still creeps in from time to time, it makes it easier to accept the right to look after my needs because if they remain unmet then I too will get sick and Tom will suffer.
If you can, fold up your guilt neatly and put it in the drawer to be taken out later when you have time for it. If your drawer is like mine it is full of guilt to be taken out later and hopefully it will be as hard to find then as my sox are now.
 

marya

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Thank you everyone for letting me know that I'm not a total b**** for wanting to have a few hours that resemble normal life. It was a difficult meeting for me - the CEO and President put "us" on the agenda. I've been told that they want my SOP's for the various duties I handle so that they can be divided among others - they expect me to take off at lest the rest of the month - even though I told them yet again that I need to be at work at least some of the time - and was told that I am not supposed to feel guilty about missing work - that I've been there six and seven days a week when times were tough before and that providing me whatever time I need off is the only way they know they can contribute to caring for Marty and for me. I am overwhelmed by their heart and so thankful that I accepted the job offer way back when for next to no money but a chance to prove myself and work my way up the ladder. I am taking the guilt, going to try to put it away for now - and try to accept the kindness of people who have reminded me that I've gone above and beyond for them and never thought a thing about it - only that I did what I could do to help. I was forcibly reminded - sitting around a conference table - that people around us not only want to provide what support they can - they actually need to do so in order to be part of this entire process. I am humbled by what they have given me in time and in understanding and in respect.
 

hopeful warrior

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Marya~ I totally get it. You are not crazy or selfish in the least. It is difficult for me to leave the house when my brother-in-law comes over once a week for a few hours. However, I've made myself get a pedicure, go to a movie, and go for a walk this month on Thursday evenings. Even though I am here with him 24/7, it is a bit difficult for me to leave for a few hours. I can report, though, that I am very glad once I go and very glad I went after I get home.
 

marya

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Thanks Hopeful Warrior - I am trying to be guilt - less but I seem to waiver on that from hour to hour. Strong and guilt free one minute and and hour later I'm awash in it. I'm just exhausted. I hope he will accept the home health care people and let them do some things. I'm revisiting my budget and going to see if I can get a maid in twice a month. I can't keep up with my job, all of my husband's needs and the housework - something has to give and I'd just as soon it be the housecleaning which I don't enjoy anymore anyway. :)
 

LauraW

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Wow do I understand. We moved Mom and Dad in a year ago and my husband and I have only been out alone less then a handful of times. I now have started to do some work because we need the money and I have to be out 3-4 hours at a time on the weekends. Sometimes I have to leave my Dad here with Mom and hope that he is not in the next room when the vent beeps or she rings her bell because he won't hear it. I leave my husband here when Dad is golfing and hope that Mom does not have a bathroom accident because she will not tell him. I tried going off of my antidepressant because it was causing me vertigo and what a disaster that was. So I am back on another one. It is difficult not to feel the guilt. When I am eating something that Mom used to love, I feel bad. She does not want that. It is not her it is me. It is so true what "Tom's Support" said.
"If you were the sick one and Tom was the healthy one, would you be looked after as well as he is now?"
You are not alone.
 

irismarie

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another point is that if you could not use this other part of you, if you did not have the freedom to make "you" complete, then maybe also resentment might ALSO become part of the picture and then even further guilt.
You just have to repeat "I am only human" to yourself.
It is evident from thousands of miles away that you are doing your very very best for both the other sides of the triangle - your husband and your work - but remember that YOU are the base of the triangle and both other sides need you so you have to keep yourself healthy and strong minded. GUilt is normal.........part of being a loving, caring person. Let it come and let it go. You are doing your best . Now take care of YOU
Much admiration and love coming your way
Irismarie
 

marya

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Thank you IrisMarie. It seems to wax and wane. Sometimes hourly. I can go from being strong and balanced to being overwhelmed by grief and guilt without any apparent trigger for the change. I feel a sense of urgency to cover all my bases. I so need this forum and the wonderful souls who populate it. Thank you Iris for being there.
***
LauraU, I'm so sorry you are having to deal with so much with your Mother's illness. We both need to accept and take to heart what Tom's Support and IrisMarie have said. Harder to do than to say - but without us our people would really not be cared for as well or as lovingly - even when we're stressed and all that.
Fondly, Mary
 
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Blubear

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Well said everyone! The bottom line of the guilt is: Work = escape. Escape = a break. A break = better mental health for CALS. Better mental heath for CALS = better help for PALS. In the end you have to think of it as another way of actually helping your PALS.
Hang in there all of ya!
Hugs, Kari
 

indigosd

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I just love this pithy quote by Erma!

“Guilt: the gift that keeps on giving.”

Erma Bombeck quotes (U.S. humorist, 1927-1996)

Or as I often remind myself, Guilt is self imposed! Let go of the guilt and enjoy the moments! Web tells me that it is only just and right for Matthew and I to keep on doing the normal things in our lives. The Monkey's have found where you hid your guilt today and have carried it all away. xo Now go get started on that Outlander Series lol
 

sanderson

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I love Erma Bombeck..she always made so much sense and could always make me laugh! Guilt , like any other emotion, can pop up at anytime and somedays it is harder to deal with it than others. Please everyone, give yourselves permission to have some normalcy in the otherwise chaotic world we know as ALS. Easier said than done I know as I too struggle with the guilt, but as a wise person once said to me "if momma aint happy, no one is happy" :) and we could change that to if the CALs aint happy then the PALs isnt goin to be either"}
I also highly recomend the Outlander series by Diana Gabaldon!
Hope everyone has a wonderful long weekend
Susan
 

indigosd

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SUSAN! So far there are Melody, Mary, you and I that love that series! We could have a Time Travelers Book CLUB! Anyone else want to join us? Oh, sorry for hijacking this thread. [blushing and apologetic] If you are interested, post on the book thread! xo
 

sanderson

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I am going to hijack for a moment too, where is the book thread? That series is my absolute favorite! I have read and re read every book at least twice and the first three I have read more than that!..
Susan
 
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